Category Archives: disability

First, read this (Ada Hoffman’s LiveJournal, the linky is not working in my WordPress. Arrgh.)

I heartily endorse everything she says. I am a parent of an adult diagnosed with high functioning autism/Asperger’s and am a special education professional. I go back and forth between self-diagnosing myself with high-functioning autism or ADHD.

With the possible exception of Michelle Sagara’s Silence (which I have not yet read), I have yet to read ANY fiction about autism that doesn’t anger me to the degree that I want to throw the book across the room.

ANYTHING.

Well, for that matter, most parental memoirs affect me in the same way. I don’t want to read about the search for a cure. I don’t want to read about “smiling through the tears.” I don’t want to read about quirky temperaments or special diets For The Cure or special programs For The Cure or Special Snowflakes who feel their autism or their child’s autism earns them a behavioral pass for bad attitudes and crappy behavior. I had a really hard time with the recommended books (except for Temple Grandin) during my sped training because they all fell in those categories.

Yeah, I’m guilty of working with my son and others to help them pass in a neurotypical world. Part of that is my job as parent and as teacher. But that doesn’t mean I’m holding it up as the ideal way–it’s more of an approach of “this is how we don’t freak the mundanes.” When my son was very small and having school problems we had discussions about The Teacher Game, and what to do when the words went away and all he could see was red. Some of this is stuff I had to learn the hard way, the very hard way and I’m trying to help others not have such a hard time of it.

But once, just once, I’d like to pick up a work of fiction and find an autistic character who is just that–autistic–without ***AUTISM AUTISM AUTISM*** flashing all over the place. Who is accepted and valued for who they are.

And no, I’m probably not the person who is going to write it. Every time I try to do it, I go blank. I can write ADHD–my character Melanie Fielding is definitely ADHD-girl–but autism?

This, too, is an Orycon thought post but I’m not going to go meta on it because I don’t feel like opening that particular can of worms. Rather, I’d sooner contemplate some of the results of my thinking–or, at least where I am on the pathway of my contemplation. And because I am thinking globally and not in the context of any one disability category or culture, I’m not identifying any one type of disability. Rather, I am using “disability” as a catch-all, metaphrase to speak in this generalist POV. Far from perfect, but because of the widely variant nature of disability, including the widely disparate attitude of those who have it (from those who see it as profoundly disabling to those who see it as a simple difference or even a superpower), no one term is really going to work. Except human. And I just don’t see the general population as sufficiently evolved to work with that term–no matter what their relationship to disability is.

Some of this is Disability 101, and for those who know, you can probably skip this post until the end, when I get into the rantage. Which is happening pretty damn fast, really.

First of all, not all disabilities view disability in the same manner, and even within the disability there are widely disparate approaches to it. Some disabilities have strong internal communities sufficient to maintain their own cultures–for example the Deaf and Autistic communities. Others strive to get rid of disability or overcome it. But even within those strong communities, voices differ. Some prefer person-first language (i.e., “person with—” language). Others abhor it.

This wide variance is confusing to the general public that has little to no understanding of disability, and it’s not made easier by the media bias overall toward a certain type of disability story. I think the best summation of that sort of story comes from Jeffrey Cohen, The Asperger Parent, where he characterizes the typical “Asperger parent story” that the media seeks to write as all about “smiling through the tears.” That is, there’s a lot of weight given to the overcoming overwhelming odds to achieve some semblance of normality despite the disability. That there are happy moments but those happy moments are overshadowed by the sorrow of the disability.

Enough explaining.

Cohen’s book was one of the first ones I read as a parent of an autistic kid that I didn’t want to scream and throw across the room in utter frustration (and then I discovered Liane Holiday and Luke Jackson, yay!). There’s been a lot of that sort of book that got thrown. Too damned much of it. What was even more frustrating, when I went through my special education training, I got referred to even more of that sort of book I wanted to throw across the room. Oh, those who did the recommending were well-intentioned. But they’d never lived with disability, either in themselves or in others. They’d only remediated disability and their focus was more on making people fit into the mainstream, not on helping people cope with the mainstream to make it work for them.

For the record, I don’t read novels about disability any more. There’s too damn many of them that make me angry. I don’t fracking WANT to read about the miraculous cure. I flinch whenever someone starts raving about this wonderful book that REALLY SAYS IT ALL about a disability.

Because it usually doesn’t.

Take autism/Asperger’s. I know this one pretty damn well as a parent and spouse and quite likely someone who is on the spectrum in a minor way (I vacillate between autism/ADHD as an explanation for my quirks). I don’t like anything I read (when I still let myself do it) with an autistic character in it. If the characterization came close, then the driving factor was about a cure. Not about the strengths of the disability but about the weakness.

WTF??!!!

I am tired, tired, tired of reading about the weaknesses of disability. I work with different disabilities daily. I see many strengths, if only the people who had them would be allowed to believe in those strengths and develop mechanisms which allow them to use those strengths. Now getting to that understanding is going to take one hell of a lot more tolerance on the part of society…and evolution on both sides of the disability.

But that’s a subject for another post….the contradictory demands and desires of the different disability stakeholders.

I’ll leave you with one last thought, though…disability is not weakness. It is a difference.

And the sooner we learn to live with that, the better.

Comments Off on Thinking about disability, part one, The Rantage, or why I hate disability novels